diagnosed with Atypical Trigeminal Neuralgia
 

Hello, I have been going thru the pain/discomfort of ATN for close to twelve months now and am tired of medications to dull the pains. I have been going to the Univ of Michigan neurology department and until not too long ago they did not want to perform surgery, now that they say it is an option although with only a 35%-55% is it really worth the effort of going through with the surgery...........of course it is worth it because if you do not try the MVD you will have no chance whatsoever of getting any better. Have you or anyone that you may know had this surgery at the U of Mich.? The neurosurgeon that is treating me has done close to 800 of these procedures over the past 15 yrs or so and use to work with a Dr Jannetta in Pittsburgh who is apparently at the top as far as these surgeries go so I have plenty of faith in my Dr. Does anyone have any reccomendations for me in dealing with all of this??

Relief for Atypical Trigeminal Neuralgia
 

Hi - I was also diagnosed with Atypical Trigeminal Neuralgia and was at the point of begging my neuro for just one day of relief from the pain.
He perscribed Lyrica and it is a godsend for me!! The side effects are annoying such as feeling loopy, and unable to concentrate - but the the relief from the ATN pain in my face is worth it! Not sure if this will help - but I've read that they are just beginning to use Lyrica for ATN, so maybe it's an option you haven't tried. I hope you too can find some relief.. it's truly a debilitating disease! Best to you, Barbara.

Hi Barbara, thanks for the info.........I have tried the Lyrica about 6mos ago and it did nothing for me unfortunately. As of today I am waiting for the appointment with my neurosurgeon to have the surgery............hopefully it is soon!

Best to you too,
Brad

Brad, I'm sorry I can't offer any advice regarding surgery as I haven't had it. I have both typical and atypical TN and I'm treating with meds. I'm too skeptical to consider surgery because of the side effects and there's no guarantee that it will do anything for the atypical pain, which you know. I know that Dr. Casey is in Detroit and he has an excellent reputation. I don't know of anyone from UM. Hopefully some of the others will post their experience.
I wish you the best outcome and I hope you'll post about your experience. Take care!

What is the name of your surgeon? I am in Hawaii and as you can guess there is NO ONE here that really knows what to do with this... my pain is deep ear, into cheek and sometimes upper jaw, for 12 mos. Lyrica worked initially but became ineffective, and I started Gabapentin and have had to double the dose ... but I don't want to just throw meds at it and suffer pain the rest of my life!

Help for my 76 year old father !!!
 

My dad is going on 76 years old and has had uncontrolable Migraines with occasional earaches and dental/jaw issues with the cause for his uncontrolled headaches undiagnosed for 2 years now. The poor man can't take much more.

We thought the Neurontin he was taking was working... it did for a couple of months, now the hehadaches are back with avengance.

He has had Catscans, MRI's visits to pain clinics, multiple Neurologists and has uttered comments that lead me to believe he is nearling the end of what he can tolerate. He is taking Vicodyn and Lortab to dull the pain when it gets really bad....on top of his 800mg Motrin's and he is afraid, like I am he will become addicted to the narcotics.

I live in Michigan, so does he, in the Detroit area.... and after reading underlying symptoms/causes for Atypical Trigeminal Neuralgia.... I think this may be close to what he is living with. He has 4 out of the possible symptoms.

Can anyone suggest a Doctor to start with in the U of M Neurology Dept? It appears there might be several doc's he might start with... and I have no clue.

Please email me if you would as I don't know when I will check this again... kroehrig at acteonnet.com is my email. This will not let me put in the @ symbol because I guess I have not done enough posts to share an email address

Thank you to anyone that might be able to help me with a starting point.... I am desperate to help my dad....

Kurt Roehrig

After all else failed, the Neurologist I saw in K.C. said " I've done all I can do, go to Mayo clinic." I wish I had gone there first. We drove seven hours in a blizzard to Rochester Minn.Top notch Neurologists in the world. I was there three weeks and I have never seen
such professionalism as they have there. I know it isn't possible for everyone to go but it was a desperate choice that had to be made in my case. Doodle bug7

I have atypical tn and have had it since 2004. been on just about everything under the sun. I tried Lyrica to and it had no effect whatsoever. Each person is different. In Dec. 2006 I had a mvd performed at UPMC, I was told at the inital visit I had a 40% chance of sucess I believe (memory is shot from Gabpentin). Anyways the surgery failed and the neurosurgeon point blank told me there was nothing to do for me and for me to go to pain management and get doped up good. He also trained under Dr. Jannetta but I heard afterwards that Jannetta didn't care much for him. The only thing that has proven effective for me is a Fentynal patch but unfortunately my state is going thru a witch hunt on pill mills and their drs. so all drs. are in terrible fear of prescribing any controlled substance so those of us in need are basically s.o.l.

I wish you lots of luck and prayers that your surgery is a sucess because we all should be able to live pain free

Found Some Relief
 

Hi Everyone,
I'm new to this, but not the pain. Have been dealing with what I though was TMJ for years (its been really bad for the last 2), and have been fitted with a couple of splints, and been on muscle relaxers, etc. About 2 months ago the pain was increasing even though I was getting treatment and I started to get a new very sharp pain any time I put food in my mouth. It was happening infrequently, but then started happening every time and was increasingly getting worse and worse, and it wasn't the act of chewing or moving my jaw...flavor seemed to trigger it. Very weird, so I have been to 3 doctors, tmj oral surgeon, ENT, and finally the neurosurgeon said we should try tegretol, and it would diagnose. Boy, was he right, the sharp pain is gone and all my "tmj" symptoms are subsiding! I feel like kissing him!:hug:

The uncertain news is that during the MRI to try to figure this our they found a 2cm mass on my pineal gland in my brain. That is why I was at the neurosurgeon. Now another MRI of brain to find out if it is just a cyst or something else, and nerve study are in my future. Keeping my fingers crossed about all of that!

My atypical TN is also very much affected by foods, although tegretol did not seem to stop that for me. In fact most foods seem to make my TN flare up, especially coffee, potent onions, salts/peppers, spices, dark beers, ect... pretty much anything that will stimulate the nerves- which is almost everything. Hell, when I take a sip of ice cold water as soon as the liquid touches the back of my gums I feel a horrible sensation travel throughout my ear and down my throat.

I got nothing positive to tell ya about TN...it took about 3 years for anyone to even diagnose me with atypical TN- after going through a handful of family docs, group of dentists, ear/nose/throat, orthodontist, TMJ expert...an oral surgeon finally sent me to a neurologist whom then diagnosed me. After an entire year of testing meds like tegretol/carbamezapine/oxcarbazepine, baclofen, amitriptyline, savella...all with almost no pain relief whatsoever, I was sent to the neuro-surgeon who wants to perform Micro-Vascular Decompression surgery, to relieve the pressure created by my blood vessel riding against the nerve.

TN has literally taken over my life the last 4 years, started when I was 19. I am unable to continue college due to the pain making concentration and comprehension much more difficult, plus the meds are also a huge learning distraction as well. I'm currently on Lyrica 150mg twice daily...makes me a zombie but usually dulls the unrelenting pain, key word there is USUALLY. However its still not worth living this way... the pressure on left side of face is almost unbearable and messes with my ear/hearing a lot. aTN makes me depressed and moody... each day is a struggle. My MVD is scheduled for a month from now...I gotta admit it scares the hell out of me.